October 8, 2020

I spoke with someone from Restorative Therapies regarding a quote for a new bike.  She was extremely nice with not so great news.  To get something like I have now would be around $25,000.  I am thinking maybe I need to have someone come in from RTI to look at the one I currently have instead.  See if maybe there is some work that could be done to fix the things that are wrong.  I would have to do one hell of a fundraiser to afford a new one or any other type of equipment.  I ride it every day and benefit greatly from it.  I sure hope mine does not break down for a long time.  I was lucky enough to have so many people donate for me to have the things that I do.    

Some of the stuff that goes on once you enter a nursing home is unbelievable. 

To start, they get basically all my money from disability every month.  I believe I get $35.00/mo.

 My nurse aides are allowed cut my fingernails but not my toenails.  I spoke with the podiatrist today and she said I can get my name on the schedule to have mine cut, but it is going to be every two months.  Two months?  Wow.  That is only going to set me up to get ingrown toenails, which is something SCI people are prone to get due to not being mobile.  I understand nobody wants an ingrown toenail, I get it, but it raises a person with the spinal cord injury blood pressure, gives us spasms and can affect our bodies in other negative and dangerous ways (Autonomic Dysreflexia).  I feel like when I tell people things like this, they think I am overreacting.  It is just something else a typical facility does not understand because out of their patients, very few have spinal cord injuries.  There needs to be a SCI nursing home with doctors and staff that understand what all the injury entails.  If I ever win the lottery I know what I would invest in!  I guess you need to play to win!  Not something I do but maybe I should start!

Just something in general that is a weird to me – my appointments get scheduled for me.  So if I have a dentist appointment on Tuesday, I wouldn’t find out until Monday sometime.  Which is a great example because I need to see the dentist because of some pain.  I let someone know and they were going to pass along to the dentist but now I do not know what is happening, when the appointment might be, etc.  and if I ask again, I just feel like I am annoying people.  My mouth is bothering me and I have to sit here, literally (ha ha) and hope it is sometime soon.  I miss making my own schedule and knowing what is happening when.  To me it is weird because I’m 38, not 88.

To top it all off, we are still being quarantined.  I have not seen my family or friends since February.  Almost eight months ago.  I have seen my girlfriend one time, when I was hospitalized, which I do not remember due to confusion.  All things I have talked about, so I am sorry for being repetitive, but unfortunately this is my life right now.  I just miss my people.

Hope all of you are hanging in there and surviving this mess.  As always, thank you for reading.  I appreciate your interest!


September 30, 2020

I have been trying to make standing a part of my regular routine.  Maybe not daily but as much as I can with my schedule. Ever since my last blog, September 19, I have done the following:

9/20       1 hour 18 minutes

9/21       40 minutes

9/23       30 minutes

9/26       50 minutes

9/27       1 hour

9/29       1 hour 20 minutes

9/30 55 minutes

I would stand longer but my blood pressure tanks.  However, something very bizarre did happen last night.  My BP went extremely low but for whatever reason it jumped back up.  That was after an hour and twenty minutes.  That is the first that has happened as far as I can recall.  No rhyme or reason, just my weird unpredictable body.

I scheduled a call with Restorative Therapies this coming Monday.  They are the manufacturer of the bike that I ride pretty much every day for 2 hours.  When I say bike, here’s what I mean if you’re not familiar – (https://restorative-therapies.com/ifes-systems/rt300/).  It is beneficial.

Since 2005 Restorative Therapies systems have been cleared by the FDA to:

  • Reduce muscle atrophy
  • Reduce muscle spasms
  • Improve local circulation
  • Maintain or increase range of motion
  • Facilitate muscle re-education

The one I have is giving me some problems lately.  Not to mention I have been using it hard for the past eight or nine years.  Over 17,000 miles.  They are extremely expensive.  I figured it would not hurt to talk to someone and at least get an idea of the cost.  Maybe I will just have to start working on a new fundraiser!


#quadlife

When I woke up this morning my blood pressure was really low, compared the usual.  It was 99/65.  Typically my blood pressure runs right around 110/70.  Give or take.  I took it 45 minutes later and it dropped a little bit more (92/56).  Again, not the usual for me at all.  I got out of bed and rode the bike for 2 hours.  My plans were to stand after I got off the bike.  I took my blood pressure before standing, just to know what the starting point was.  Well, it was high.  Extremely high.  170/115.  I’m assuming it was because of my pain in my foot when I ride.  I slowly started to stand, going in small increments like I’m supposed to.  Going up too quickly will make my BP drop really fast.  50 minutes after my really high blood pressure, it dropped to 110/72.  It continued to drop to the point where I had to come down.

4:15 PM 94/66

4:25 PM 83/61

4:30 PM 75/51

4:35 PM 72/50

At that point I had to quit.  I took it once I came down the whole way and at 5:00 PM it was back up to 118/81.  It’s crazy what the spinal cord injury does to your body that some people don’t realize or understand.  It’s not just the fact that I can’t walk.  Just wanted to share with everyone.  Oh yeah, I was able to stand for 46 minutes.  21 more minutes than I could yesterday! Thank you for reading!


More standing

I haven’t been able to stand anywhere near 1 hour 45 minutes like I did last weekend. Not sure what I did differently to be able to tolerate everything but I haven’t been able to get anywhere near those numbers. The past few days it’s been in the 20s. I forget what the numbers were Tuesday but Wednesday I didn’t stand, Thursday I was able to do 22 minutes and 25 minutes today. It’s pretty good but not exactly where I’d like to be. I had to stop because my blood pressure keeps tanking. Today it dropped to 67/51, which is ridiculously low. I decided to come down and see if it went up rather than take a pill. Fortunately it did. I’m thinking the more I do it, no longer I’ll be able to stand. Anyway, here are two pictures from the past two days. Just thought I would share.


Standing again

No description available.

Last week I stood for 23 minutes before I had to stop because of my blood pressure dropping. Today I stood for 1 hour and 46 minutes! It was crazy, in a good way. I haven’t stood that long in quite some time. My blood pressure jumped all around the place. It went down to 85/67 but I kept going. Normally, as far as my routine goes, when I have blood pressure below 90 I need to take a pill to raise it. I decided to hold off and keep standing. We kept monitoring my blood pressure and surprisingly it actually came up. The only reason I came down was because my heart rate increased and we wanted to do other things! It’s crazy how the body works! Glad to be standing again.


9/11

Hard to believe 9/11 was so long ago.  I hate seeing documentaries where it replays everything from that day but at the same time, I think it’s extremely important.  All of the life lost from the actual accidents.  From first responders and citizens stepping up, to the bystanders in the planes, buildings and on the ground that were killed.  It’s a sad but great thing to hear about because we should never forget.  God bless the USA!


Two exciting things day. I wasn’t able to stand since July, per doctor’s orders, because I previously injured my ankle. Yesterday I did 4 minutes. Today I did 23 minutes. The only reason I stop is because my blood pressure starts to tank. Before I stood for the first time today we took my blood pressure and it was 137/98, which is actually kind of high for me. Typically I’m around 110/70. So I was able to stand and we periodically took my blood pressure. I wasn’t feeling ill but I could slowly feel my blood pressure starting to tank.

1:45 PM 137/95

1:55 PM 105/78

2:05 PM 98/68

2:10 PM 90/62

Once it got to that point I had to stop. Once it goes below 90 I need to take a pill. Instead I stopped and sat down. 2:20 PM it was back up to 107/78. It’s strange how my body works now with a spinal cord injury.

That’s my update. Hope everyone is doing well!


Interview with a fellow quad!

I was lucky enough to do an interview with a fellow quadriplegic. Very nice guy and our first of hopefully many interactions. Give it a watch if you have the time. Thanks for watching!


https://www.youtube.com/watch?v=ZxyFmf0zgdQ&feature=youtu.be&fbclid=IwAR3B7k0rCjTI611ItmfsHSZoQ06IK6yM2bT5dJKiz05E65zS_kZiN5j9akg


Week two playlist

Hope everyone had a good week. Looking for some good music to start the new one? Here you go! Some of these songs may contain bad lyrics, for anyone that cares. If you’re not aware, those songs are indicated by saying explicit. Just FYI. 

🙂 Have a great week!

https://music.amazon.com/user-playlists/af8354019a3f4d09b13e4a5107c231afsune?ref=dm_sh_13cf-0ea0-95b2-8da6-92761&fbclid=IwAR1aEPKkX6stAg35-7pDL2c5W2RdLReY41YoIYLItww92pa1g3kusJpr2RE


Enjoy music?

One thing that distracts my mind and gives me joy is music. Finding new music and sharing it with people is even better. I’m going to do a playlist every week and share with you. Hopefully some of you we’re able to listen/want to listen. They’re good tunes. You should check it out! Distract your mind.

https://music.amazon.com/user-playlists/20b2e471dbee4be7bd2f49fdd65e2dd8sune?ref=dm_sh_1669-103f-c995-a2d0-326af&fbclid=IwAR1gDeCX7X_XX4q4qtFuOf4-K7MQslV2SUl8Z5g8gd9zeds8HKes_IpPmkI


Update

So this might be totally random but this is where my head is today.

This Covid thing is totally legit and needs to be taken seriously but it’s driving me to my breaking point. I’m not sure if I’ve been this depressed before. I’m trying my best but this is difficult. After everything I’ve been through… Injury, surgeries, moving and all the little and big things in between, I’ve had my people around. My people being my girlfriend, family and friends. Not this time. And I know everyone here is going through the same thing. I realize that. And it’s tough for everyone. I know. I don’t feel like I should get some kind of special privilege, but at the same time, I do. I feel different. I’m 38 years old. I don’t have dementia. Yet. This situation is honestly bringing me down so much and I feel like I’m going crazy sometimes. I’m trapped on the third floor of a nursing home. It’s not bad living here or anything. Being here isn’t a problem. I mean, I would much rather be elsewhere. It’s the fact that I feel trapped.

My facility has been quarantined for some time now. I’m not allowed to leave, go to different floors or do too much really. I can go out of my room and on to a porch but that is usually inhabited by a unkept dude who sometimes works out with a piece of PVC piping with his belly and butt crack hanging out. He’s a good time! My home is waiting for everyone’s Covid test results to come back negative in order to open up again. (All residents and employees from my floor were tested this past week.) At least open up so residents can move from floor to floor. Who knows when we will open up to the public. I’m so used to people telling me what to do, where to go and when to do it, I’m not sure I’ll do with myself if things ever go back to normal. Maybe make plans to actually go out… Doing things. With people. Anyway, my test came back negative. That was the third one I’ve had since this whole pandemic started. I love the tests. Especially the one that goes really far into your nostril. Perfect for when the back of your brain is itchy. Things are just ridiculous. For example, in order for me to go to my dentist appointment downstairs I have to wear all out PPE. Mask, shield and gown. To travel two floors. Two floors. In the same building that I live. Unbelievable

I haven’t seen my friends, family or girlfriend in five months. That is of course with the exception of briefly seeing them when I was hospitalized but, I don’t remember much from that time. After all, I thought there was peanut butter and handwriting on the walls. I guess I kind of lost my shit so maybe not seeing anyone for the best. It’s beyond frustrating when I can look outside and see how beautiful it is. I’m always cold so I really enjoy getting out in the sun. Not allowed to do that. I can always go on that porch I mentioned earlier. Party! So I’ve spent my entire summer in my room or on the porch with that guy with the pipe playing board games. Thank god for my computer and technology so I can keep in touch with everyone and keep from going crazy.

Thanks for reading about my life. My journey. Not overly exciting these days. Maybe again one day.


So much has changed since I last checked in. I moved from home into an assisted living facility January 24. A nursing home. Don’t get me wrong, It’s much more than that. Very clean and everything someone would want for their loved ones should they need to be in such a place. Everyone is accommodating and extremely friendly. Unfortunately, this is where my life has brought me so I’m trying to make the best of it. It’s hard, especially with the corona virus/ quarantine happening just a month or so after I moved in. I haven’t seen my family or friends in over a month. My girlfriend for almost two months. Thank God for Skype and Zoom. Not sure what I would do without that technology. Can’t imagine what the older generation is going through without the things I get to use every day

My birthday was almost a month ago and I didn’t see anyone I love. Might not sound like a big deal but when it comes down to it, but when was the last time you spent your birthday alone? Extremely fortunate I’ve grown up with those that I love always around me during rough times. I’ve been through a lot. Spinal cord injury, surgeries, therapy and recovery, constant pain, anxiety and depression, sleep apnea, not being able to sleep and the list could go on. Medication for everything. I have to admit, this is one of the hardest things that I’ve ever have to do. I realize I’m very fortunate to have everything I do. Please don’t get me wrong, I’m extremely grateful. It’s just hard. Life is hard for everyone, and someone somewhere else is always worse off and has their own story.

Having said all this, I know we will get through. It’s just a waiting game as long as people respect the guidelines given to us regarding the virus. Hopefully a year from now this will be in the past, there’s a vaccine and we don’t have a new kind of annual ‘flu season’ to worry about. I have a feeling we will see people walking around with masks on for a very very long time, but we can get overcome this if we stick together.

Not sure what else to write about right now. Just wanted to check in. Stay safe. Respect the rules. Love your friends and family! Appreciate everything you have! Everything!


16k

I get an e-mail every Monday letting me know my stats from the previous week regarding my bike riding. For those that don’t know, I pull up to a machine, get pads connected to my legs, feet put into place and go. Most of it is the machine but I can help a little. Again, 99.99% is a machine but still. It helps. I usually do 2 hours a day during the week when I don’t have appointments. 8.3 miles per session, over 16 miles a day. Anyway, I got an e-mail this morning telling me my overall numbers. I’ve done over 2000 sessions which would be 2000 hours and 16,000 miles. Pretty cool and I’m fairly proud so I wanted to share. Thanks to everyone who donates to my fund. These things are expensive but I get a lot of use out of them and it is definitely beneficial. This thing will not run forever and I will have to do another fundraiser to replace it. Just letting those who gave know where your money goes. One of the many things anyway. Thanks again!


Hello everyone! I started a fundraiser, if you want to call it that. It’s for my fund which covers all things not paid for by insurance. Here’s the link if you’re interested in donating. Thank you so much to everyone who has donated and who will. It is so very much appreciated!

https://www.gofundme.com/f/10-years-down?sharetype=teams&member=2696588&rcid=r01-156547828777-3e4cf018a5fb4350&pc=ot_co_campmgmt_w